I've had enough; going to see a surgeon

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Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 9/9/2010 5:26 PM (GMT -7)   
Well, that's it for me. I've had enough years and years of suffering since my last resection. I'm now having obstructions pretty much daily, so my GI is sending me to a surgeon. I'm pretty sure a stricture is causing most of my suffering right now.
I hope I will get surgery ASAP.

WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 9/9/2010 6:07 PM (GMT -7)   
When was your last resection Roni?
33 year old female
CD of Terminal Illeum and Rectum Diagnosed 12/04
Malignant Melanoma in 2000.
Illeocolonic Resection 1/08 (18 inches of terminal illeum, illeocecal valve, right colon and appendix)
Current Meds: Pentasa, Fosomax, Vitamin b12 injections, Vicodin as needed.
November'09 colonoscopy shows reoccurance at anastamosis and active disease in sigmoid and rectum

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 9/9/2010 6:24 PM (GMT -7)   
I had my first resection 5 years ago. I was having obstructions then too. I suffered non-stop before and non-stop after because the CD recurred immediately.

I've been sick for over 13 years. I'm a young mom and I want to have a chance at remission so I can have a better life with my kids and husband.

My plan is to have the resection and start all over again with fresh treatment, hopefully with a better outcome: go on meds right away this time (pentasa and whatever else the doc says), stay on probiotics, digestive enzymes, eat a healthy diet as natural as possible.

If anyone has any suggestions/tips on how I can stay in remission after surgery, please let me know.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/9/2010 7:17 PM (GMT -7)   
(((Roni)))

Wishing you speedy relief and a long remission.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 9/9/2010 9:05 PM (GMT -7)   
Roni, I stayed on SCD after my surgery last September. I also take Pentasa and LDN. My guts are still in good shape, and I haven't been on a biologic for a year. I've even been able to eat some raw fruits and veggies this summer. I need to get a colonoscopy this fall, so that will show for certain whether I'm in remission. I think I am, the only real symptom I have is fatigue, and that could be due to something else (like my thyroid).

Good luck, I hope you can get scheduled for surgery soon! It's such a relief to not have to deal with obstructions anymore.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, CoQ10, Betaine HCl
SCD since 12/01/08

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/10/2010 7:47 AM (GMT -7)   
Ah sorry to hear that Roni. I was told after my first resection that I no longer needed meds. BIG MISTAKE!! I ended up having a repeat resection only 3 years later. So do get back on your meds and diet this time, so you can fully enjoy life and your little one. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 9/10/2010 9:00 AM (GMT -7)   
I'm so sorry - I fear I'll be in the same position in a few years. My first resection was in Feb and my remission lasted 34 days. I was barely eating anything before the disease started manifesting itself so I know it wasn't due to diet.

I think sometimes this disease is a crapshoot. You can take the meds, eat the right things, lower your stress level, etc and still end up struggling on a regular basis.

I hope you can get it scheduled soon and start the healing process.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 9/10/2010 9:03 AM (GMT -7)   
After my first resection, I went back on pentasa, but maybe imuran would have been a good idea too. I didn't start probiotics, digestive enyzmes or an easy to digest diet until about 1-2 years after my resection, by then I was full blown obstructed again. I found the probiotics enzymes and diet helped and for some people it might be enough to induce remission, but I think it was probably too late to stop my disease altogether.
Still it was worth a shot to try to avoid surgery again, but I've had enough. I'm gonna start all over and get the natural and conventional treatment going right away after surgery.

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 9/10/2010 12:56 PM (GMT -7)   
You know, you would think they could do something like stints to force the narrowing open rather than just cut sections out.  Just a wild thought I had.  I wish you luck.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
Caltrate-D 1000mg/day

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 9/11/2010 8:44 AM (GMT -7)   
The radiologists think I have inflammation as well, so I just want them to take this CD out of me. I only have about 3 inches or so of acute CD and stricture. Last time it was 10-12 inches of CD with a stricture. I have been trying for 5 years to get this recurring cd under control and nothing has put me in remission. This time will be different hopefully because I have a better plan in place. We'll see.

Post Edited (Roni) : 9/11/2010 10:03:57 AM (GMT-6)


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/13/2010 4:45 PM (GMT -7)   
spookyhurst, its interesting to see you are mixing LDN with another med...why the combo?
 
 

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/13/2010 4:47 PM (GMT -7)   
Roni, which meds have you tried in the past years?
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 2000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 twice a day (one B complex, then later one B 500), 10mg zinc. SCD diet. 

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 9/13/2010 5:20 PM (GMT -7)   
prednisone, entocort, IV steroids, imuran, remicade class drugs (can't take cause of a heart problem now), pentasa, maker's diet (which did help, but not enough because I think part of my problem is a stricture), probiotics, digestive enzymes, other natural remedies, a resection, and I can't remember what else.

I really need to get this stricture taken care of, then I'll start all over with fresh treatment that will hopefully help this time.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/13/2010 5:29 PM (GMT -7)   
I was undiagnosed for 10 years and the damage was severe. It took another 10 years and 3 resections to undue. I had symptoms within 6 weeks of one of my resections. I think that the surgeons are so concerned with leaving as much bowel as possible that some microscopic disease can be left behind. If you aren't on the right medicine, or combo, immediately following surgery, then it gives that little bugger a chance to take hold.

So far things have been pretty calm once I got the "bad" stuff out and got on the right medication. I hope it works for you and you can get back to living life.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 9/13/2010 9:22 PM (GMT -7)   
Roni, I take the Pentasa to pacify my GI, and as a backup to SCD and LDN. She's upset that I quit Humira, but I've been off it for a year with no problem. She doesn't know I'm on LDN. She was against it, so I just didn't tell her. It definitely helps though, because my energy level tanks when I don't take it. My body misses the endorphins!
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, CoQ10, Betaine HCl
SCD since 12/01/08

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/13/2010 9:54 PM (GMT -7)   
Roni, good luck! Looks like you've run the gamut of diet and meds - I'm hoping the surgery will dramatically improve your quality of life!
 
Spookyhurst - do you have blood tests to check CRP, sed rate, and vitamin D 1, 25? The reason I included the vitamin D 1,25 is because when D 1,25 is above normal, it can point to inflammation.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 9/13/2010 10:11 PM (GMT -7)   
Not recently njmom. I'll ask my GI when I see her next month. I had a vitamin D 25 test done recently. It was 50, which I believe was right in the middle of the range.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, CoQ10, Betaine HCl
SCD since 12/01/08

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/14/2010 12:14 PM (GMT -7)   
THere are two different vitamin D tests. One is vitamin D hydroxy, the storage vit D, and the other is vitamin D 1, 25, the active vit D. Crohn's patients tend to be deficient in the storage D, and too high in the active vit D. So both vitamin D tests need to be done. A result of 50 would be pretty good for the vitamin D 25 hyroxy, and is OK and well within the normal range for vitamin D 1, 25. But you do need to know which was which - my guess is only one form of vit D was checked.  

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 9/14/2010 3:43 PM (GMT -7)   
Yes, the 50 was for the D 25 hydroxy.

I'll be sure to ask my GI for all of these "inflammation" tests. Sounds like a good way to keep an eye on things. Thanks!
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, CoQ10, Betaine HCl
SCD since 12/01/08
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